ProHealth’s 2013 Advocate of the Year – Jennifer Brea

ProHealth is proud to announce Jennifer Brea as its 2013 “Advocate of the Year.” The Advocate of the Year award goes to an individual who has made outstanding contributions to the betterment of the ME/CFS community. ProHealth’s 2012 Advocate of the Year award went to long-time patient advocates Bob and Courtney Miller.

Jennifer Brea contracted ME in 2011, when she was suddenly hit with a flu-like illness. A little over a year later, she became bedridden - just a few months before her wedding - when she developed complex migraines and POTS, and began having difficulty reading, writing, and speaking (aphasia). Suspecting her symptoms were neurological, she made an appointment with a neurologist, who told her she had “conversion disorder.” (Formerly known as “hysteria.”)

At the time Jennifer was enrolled as a PhD candidate in Harvard University’s Department of Government. She was also pursuing a Master’s degree in statistics. Before beginning her doctoral program, Jennifer had pursued an active life as a freelance journalist covering China and East Africa for the Guardian, the Scotsman, the Africa Report, China Daily, and Ebony Magazine.

It was her background in journalism and politics, as well as her unwillingness to accept what she called a “Freudian” diagnosis, that led Jennifer to investigate ME. (Jennifer’s opinion of “CFS” is that it is a “horrid name.”) She soon realized that the illness that had put her life on hiatus had affected more than a million individuals in the U.S. and that the medical establishment was not only ignorant of the problem, but condescending in its attitude.

Because Jennifer could not write, she began keep video diaries on her iPhone. In an effort to learn more about the illness, she read Hillary Johnson’s expose about the CDC's coverup of the Incline Village outbreak, Osler’s Web, and watched the film, I Remember ME. Before long, she became enmeshed in the community, and in its 30-year history of frustration. Jennifer came to the conclusion that she had to do something to convince scientists that ME was worthy of investigation.

“It’s a really tragic thing,” she says in a revealing TED interview. “There are a lot of people who are severely mistreated because of this. There are people who are getting locked up in psych wards. There are people who are encouraged to exercise and, as a consequence, are permanently harmed. There are parents whose children are taken away from them. There are people who become homeless. It’s just really hard for me to fathom the waste of life that this tragedy has created … I thought, I’m not a Hollywood celebrity, but I have some resources, and I’m sick but I’m not nearly as ill as some people are. I can move my hands, I can go to the bathroom. That’s enough for me!”

It was this courageous spirit that led Jennifer to the idea of making a full-length documentary about the illness. But, unlike other documentaries about ME, Jennifer wanted to place the people who endure it front and center. To drive home the impact of the illness, Jennifer wanted to feature the stories of patients – those who have struggled for decades, those who have found some success, and those who haven’t – as well as the clinicians who have spent years treating those patients and attempting to unravel the puzzle of ME.

Last October, when she began fundraising for her film, Canary in a Coal Mine, Jennifer raised over $50,000 in just three days. By the end of the month, the project had garnered over $200,000 in an unprecedented outpouring of support from the ME/CFS community. This enabled Jennifer to set her sights on a larger project. In November, Canary in a Coal Mine won Indiewire's Project of the Month, which won her a creative consultation with the Tribeca Film Institute, one of the industry's most prestigious funders of innovative film projects.

This won’t be Jennifer’s last film, nor is it the end of her research into the illness.

“It’s the one thing I’ve found that challenges me intellectually and creatively. I love being a researcher, I love doing academic work, but I also need to do mission-driven work. This gives me the opportunity to do all three. I believe that we will make a beautiful film and it will change things forever for our community.”

And congratulations to Jennifer Brea! This award is so deserved. She's a relative newcomer to ME/CFS (many have been sick for decades) but already she's proved herself a powerhouse, galvanizing the ME community with her Kickstarter campaign last year, and every time she and her documentary wins notice, as it keeps doing!, a breath of fresh air and hope sweeps into the dark and cloistered bedrooms of those of us who lie ill and unseen. Her ongoing Kickstarter updates have also helped spread the word among patients and supporters about the most pressing current issues for ME/CFS (including the Institute of Medicine's new role in redefining the disease's diagnostics, a mostly unwelcome and controversial move, to say the least), and this in turn, allows for increased viral outreach. As a patient now for 11 years, whose once active, vocal life has been shattered by ME, I am grateful to Jen for the face and voice she is giving to a desperate and neglected cause. May the ProHealth Award be a harbinger of great things to come.